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The Big D

averyevansmom

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averyevansmom Apprentice
averyevansmom
Posted

Does anyone's children have bouts of unexplained D (pasty not loose-watery) after being on the diet for a while? He was doing so well. Is this common or a fluke. I know or am pretty certain he has not been glutened. I've been keeping a food journal, but he's been having D off and on the past week week and a half. I'm starting to think maybe I'm barking up the wrong tree and all the doctors have been right. My husband thinks otherwise. He thinks that because he's done so well all along that we shouldn't worry. My concern is the iron. I don't want his solid movements to be from the iron. He's been on the iron since early December and we sarted the diet Jan 16th. His first ever solid bm was the middle to end of January. I don't know what to think anymore. Maybe it is Crohn's. I hope it isn't. He seems so much NOT to fit that description. D was so bad tonight that his bottom was raw again and we had to immediately put him in the bath. He was screaming. I'm at a loss.

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Becky6 Enthusiast
Becky6
Posted

Is he eating dairy? He may not be able to handle too much until he is healed. Did he have more dairy than usual the past few days? From what you have said he has made great strides being gluten-free and gets worse if he gets gluten. Hang in there and see if you can figure out what may be bothering him. My daughter was getting small amounts of gluten from stickers and stamps. Once we got rid of that she was better. Good luck!

averyevansmom Apprentice
averyevansmom
Posted
  • Author

Will he react to tiny amounts of whey or something else that he never reacted to before? I think it may have been the huge amount of broccoli he had last week. He had it three days in a row and he has a huge bowl off it with supper. I've not let him have it since and he had two normal bm's yesterday. I also have not given him his iron (feel rotten about that) just to see if it was that making him solid. Nope. The last day of broccoli was this past Monday. Is pasty poo still considered abnormal? I've read everywhere that it is. I just hope the broccoli was the reason and not something else so I'm not beating my head against the wall again. I would hate to think it was Crohn's. I sent this lenghty article to Evan's dr. from a conference that Dr. Fine held in Dallas March 3-5 about his research. He said he would read it and give me his take on it. I hope he has an open mind and doesn't shoot it down. Once I hear back I'll let you know the outcome. Thanks for your response.

Becky6 Enthusiast
Becky6
Posted

He could be. I never realized that dairy was a problem for Belle until she went gluten-free. Then it became apparent that she could not handle any amount of dairy. Even whey in crackers. Finally after 4 months of gluten-free she can tolerate it again. Good luck! The fact that the diet has been positive points towards celiac.

flagbabyds Collaborator
flagbabyds
Posted

i would cut out all dairy cause that can cause major problems to a lot of celiacs.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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